Jul 13, 2013

A Glimpse Into the Life of an Alzheimer's Caregiver

When guilt catches up with me, I am on the bike path above the creek, ducks swimming along beside me. Guilt rolls off our backs like you know what. Alone at last, I walk at my own pace. Fast. 

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By Bob DeMarco
Alzheimer's Reading Room

I first read this story written by Perris Knoble in 2006. I was still wondering what life would be like for Dotty and me.

I moved to Delray Beach, Florida to take care of my mother, Dotty, in November, 2003. At the time, I just dropped out of the world to figure out what was going on. I had no idea my mother was suffering from dementia, and still had no clue after a few months and a couple of inept doctors. Personal care doctors, for the most part, didn't know much about Alzheimer's and dementia back in those days. Do they now?

Those first couple of years with Dotty were pretty bad, somewhat horrific, and certainly burdensome for both of us. We finally got it straightened out after a long period of struggle.

I am, we are, interested in hearing more about your personal struggles and metamorphosis as you come to understand, cope and communicate with a person living with Alzheimer's.

If you have a story of your own, send it in for publication here on the Alzheimer's Reading Room.

If you have the time please use the comments section below to share your reaction to this story, or share your insight.

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Keeping Time with Alzheimer's

Hanging on like the mom of a new kindergartner, I watch my husband from the social worker's glass cubicle. He is facing the piano player, the shrunken woman on one side of him, and on the other, falling asleep, the guy they call the Major.

Ben -- of all people -- in that circle, a little dazed, being good, going along with the group, his new group. I can go home now and be alone for six hours. No TV, no one trailing after me. Shadowing, it's called. He doesn't always do it. Not yet.

He nods his head in time to the blues, then Gershwin suddenly returns some one's smile. It's beginning to look like a good bet.

Senior Access, it's called, adult day care.

This branch is in Novato, the best game in town as far as I know. I checked out every possibility that had a few men on the scene, not just a roomful of elderly ladies. Each time I took one look and said, "Never. Never Ben." So how did never become now?

Here is a moment, and for a change I recognize it. I will have a permanent memory of him joining the circle, lowering himself into the chair, eyes fixed on the piano, head bobbing immediately with the rhythm of the blues, then patting his knee as if he is soothing it.

He knows he's in the right place before I do. He's one of them, not as far along on the Alzheimer's road as some, still dapper in his crisp shirt and clean Dockers. But he is one of them.

There is no going back to where he was, doing what passed for functioning at home, where he could still propel himself through the day with TV and frequent naps.

He is ready; I'm the one not quite ready.

From here in the cubicle, for the first time I see what "down the road" means: squeezing out every ounce of making it work at a level you can live with and then stepping down to the next level. Step, step, stepping along.

This is a good thing, I say to myself on the drive home, and I shouldn't turn it into dross because it's a gift. It's as close to what he needs, what we both need, as anything I could find, stimulation for him, a little freedom for me, twice-a-week freedom.

Maybe we can work up to three days, who knows? And what will I do with the time and life this offers me? Catch up with two years of unfinished business? The house, the desk, the roses? Give way to a free-flowing all-out depression?

There is a Costco just off the freeway and the car veers off to the nearest exit on its own. "What am I doing?" I ask myself, as I push a huge cart with three items in it: two plants for the garden and a polo shirt for him. "What am I doing, killing a morning like this, wasting it on shopping?" Guilt approaching panic is making my heart beat faster. I will barely get home and have to go back for him.

Setting the plants near the front door with a thud that loosens the soil, I head for my desk. Checkbook and bank statement to my left, Italian class assignment to my right, I study the space between them until the phone rings. Sandra from the Caregiver's Group. "Would I have time for a few brief questions?" I already had time for a few brief questions. She asks about my family. Are they helping me? Am I being good to myself? Answer on a spectrum of "Always" to "Never." I answer with "Always" or "Never," nothing in between. Sandra says she'll call back another time.

When guilt catches up with me, I am on the bike path above the creek, ducks swimming along beside me. Guilt rolls off our backs like you know what. Alone at last, I walk at my own pace. Fast. Fast is what Ben can no longer do -- and fast is slow compared with the woman coming toward me as I near the marsh. She is wearing shorts and earphones. She smiles and I smile back. What a good idea this is, walking out in the sun and cold. What could produce better clarity? I don't have to work it out the first day. I don't have to do it right the first time.

By the time I go back for Ben, I'm capable of being quite pleasant.

I don't ask him how it went.

He still looks dazed, but he smiles when he sees me. We drive home, have dinner and rent a movie. A musical. We love musicals, the older, sweeter ones and the biting, jaded shows like tonight's. At least we used to. Neither of us is crazy about this one. I try to pry a critique out of him and he gets as far as "It was ..."

Then he opens his mouth wide, an expression of alarm in his eyes, his arms waving frantically. Abruptly he drops the pose.

"It was ..." he says again and waits. "Boffo?"

I ask. He doesn't answer. It is hard to engage him. "You mean every number was a showstopper? Over the top? Like Liza Minnelli?" He nods, slowly at first, then with mounting pleasure as I elaborate on the word "boffo" and I know one thing:

He's not all gone. Not yet.

Persis Knobbe, Special to The SanFrancisco Chronicle
Wednesday, December 27, 2006
Source The SanFrancisco Chronicle

Bob DeMarco is the Founder and Editor of the Alzheimer's Reading Room (ARR). Bob is a recognized influencer, speaker, and expert in the Alzheimer's and Dementia Community Worldwide. The ARR Knowledge Base contains more than 4,000 articles. Bob lives in Delray Beach, FL.
To learn more about Alzheimer's and Dementia visit the Alzheimer's Reading Room.